2 Months of Lymphedema Treatment
It all started in February. I couldn't breathe, eat or swallow water. Every time I went to talk, my neck would swell, and my tongue would lock badly to the point where I felt like I was being strangled from behind. I could be in my van just sitting in my powerchair and experience this out of nowhere. Extremely painful and scary, something I have dealt with plenty of times daily, but this was an extreme kind of pain in the neck/ tongue area. What scared me the most was my tongue locking for a longer period and unable to sip water. Ice or massaging my neck wouldn't do a thing. This gave me more panic attacks too. We all know that isn't fun. I would immediately go outside for fresh air. Finally, after suffering for weeks without telling my Doctors, I reached out to my team at MD Anderson and explained my symptoms to them. I had to send them multiple pictures to tell me what it “could” possibly be. This way, I didn't have to return to Texas so soon. My Team told me I still have Chronic Lymphedema, which I never treated before back in Florida. I have had Chronic Lymphedema since my second recurrence in 2013. I never took care of it since my life is hectic, and I didn't think it would get worse over time if left untreated because no one told me to treat it in Florida.
Every day, five days a week, and for two long brutal months, I had to get a two-hour Lymphatic drainage Massage that is NOT covered under health insurance at ALL!!!! Due to my multiple medical conditions, I had to fight to protect it. I couldn't afford $295.00 PER DAY!! For this type of treatment. The Doctors at the office told me during the Lymphedema intake, and I started to panic. How the heck do cancer patients avoid this cost? Bad enough, we have to deal with cancer. Why doesn't insurance cover this? To be honest, I was panicking, and I almost walked out until the lady at the office stopped me. The office was like, “Don't give up ''. We can fix this, and they told me what to do. Something I’d never experienced before, so I didn't know where to begin. It's all just so stressful and exhausting. I had to write a letter to my insurance company, and the Lymphatic Doctor plus the Lymphatic specialist had to write a letter stating how severe my neck was just to get this covered, plus a lot of my medical history. Thank God, It was approved due to my circumstances. I just got very, very LUCKY! So the two months began, and I counted the days until this was over. It was beyond physically and mentally draining, going back and forth every day. It took a toll on me, my dog, and my family since they had to take me daily. The worst part was it wasn't the same time every day. Sometimes it would be late at night, 6 pm. Like, C'mon now. They just give you times as you can magically show up right then and there; they don't even ask you if this is a reasonable time frame. They give you two months worth right off the bat. Trying to change a day was a battle.
What is Lymphedema? Lymphedema is a chronic lymphatic disease resulting in disfiguring swelling in one or more body parts. It can be hereditary or occur after any surgical procedure, infection, radiation, or chemotherapy.
Why is the Lymphatic System Important? Fluid transport is essential, but many do not realize that the lymphatic system is part of your immune system. It fulfills the function of “ immune trafficking,” the process whereby infection-fighting cells can be mobilized to the tissues that require assistance. When the lymphatic system is compromised by surgery or trauma, the affected part of the body is prone to recurrent infections because of the faulty surveillance mechanism. Radiation and Chemotherapy can traumatize the lymphatic system equivalently to surgery, even if surgery was not done. The primary risk for lymphedema development is in the first year following surgery and radiation therapy when 90% of the cases occur. By the end of 3 years, 95% of the patients will have appeared. You will have to maintain Lymphedema for the rest of your life.
My Neck circumference was 44.0% fluid when I first started in February. The base of my Neck was filled with 39.9% of liquid. My massage therapist would measure my neck for progress and insurance purposes each week. After two months of Lymphatic Drainage massage treatments, My neck decreased to 42.0. I was given a compression garment daily at home for 2-3 hours while doing house chores. This garment is complicated to wear. You feel like you’re being suffocated, but it must be done daily to prevent swelling.
Here are photographs of my Neck's appearance before and after Lymphatic treatment. You could tell just by looking at the photographs that the lymphatic drainage massage did help tremendously. I still have to go back for another week. This is something else I have to keep at it forever to prevent more swelling and fluid buildup.
🤟🏻Danielle
